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04-26-2013, 11:17 AM | #11 | |||
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I guess no one read the article cause ...
"No cases of PML have been diagnosed in Tecfidera patients" "Including the two case reports published Wednesday, a total of four patients have been diagnosed with PML since Fumaderm was approved in Germany in the mid-1990s for psoriasis, Biogen said. However, in two of the cases, patients had additional risk factors for developing the condition. Biogen has said in the past that the PML rate is consistent with what medical literature expects for patients with autoimmune diseases such as psoriasis" Tecfidera is NOT Fumaderm. |
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04-26-2013, 11:28 AM | #12 | |||
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Wisest Elder Ever
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I read the article.
It states that "The problem is that the studies with BG-12 covered a two-year period, but no longer periods," Schulz said, and he believes it may take prolonged treatment with the drug for PML to surface." It also states that "The ingredient, dimethyl fumarate, is used in a drug called Fumaderm that was approved in Germany in 1994 to treat the skin condition psoriasis. It is also in a different but closely related medication called Tecfidera, which was just approved by the U.S. Food and Drug Administration in March for the treatment of multiple sclerosis (MS). It is known as a fumaric acid ester, which is commonly used as a food additive and has been used to treat psoriasis in Germany for 30 years." It's going to take some time for any cases of PML to surface for patients who take Tecfidera. A two-year study just isn't, in my humble opinion, long enough to make an educated decision. Each patient has to make their own decision and decide whether or not the risk versus the gain is something they're willing to take. There are no "wrong" decisions here.....just individual ones.
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04-26-2013, 04:20 PM | #13 | |||
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I'm still willing to try. I had to stop Ty because of JC+ and weird MRI but blood tests were normal. It's always something with these drugs. I should get my 1st delivery next week. My BC/BS rejected the drug so I had to use PA and it was pretty fast and not really complicated. I hate needles and being hooked up to an I.V. once a month was traumatic.
I'm ready for side effects and all. The manufacturer sent me a pill box already. I've tried 3 forms of treatment already and hopefully this will be my last. |
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04-26-2013, 07:14 PM | #14 | |||
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Awesome reply Mocha thank you. Just got back from brain MRI w w/o contrast, thin slice.
I can't wait after using copaxone a few yrs- rebif a few months- tysabri 2.5 yrs. All worked excellent 1st 2 yrs. Regained function lost. Well, i/m fading fast & next Ty is tuesday if i don't get Tecfidera by then. I'll wait a few more weeks to start if needed. |
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04-27-2013, 10:45 AM | #15 | |||
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I'm still in! Waiting for someone to call me to set up a pharmacy. This report does not scare me. If you read it carefully, there were different situations with these two cases.
My doc is going to monitor my white cell count a little more often at first and that is fine with me. Remember too....this drug has been fought against by the other major drug companies because they know its going to make many other drugs unpopular.
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. If you obsess about things that may happen and they don't come true...then you've wasted your time. If it does come true....then you've lived it twice. . |
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04-28-2013, 08:42 AM | #16 | |||
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Senior Member
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How will you know if it's working, Eddie? It is like all the other DMDs that supposedly merely slow down progression. Have you read something that says it calms a flare?
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RRMS, diagnosed '00 Everything will be alright in the end. If it's not alright, it's not yet the end. |
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"Thanks for this!" says: | ANNagain (04-28-2013) |
04-28-2013, 11:33 AM | #17 | ||
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Senior Member
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Sparky-
Do you have that backwards? Did you mean that DMD's reduce flares rather than progression or did my mind bend it?? ANN |
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04-28-2013, 11:35 AM | #18 | |||
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I'll know because every morning i seem to lose a tad more sensory, and by the muscle jolts at night. Strength, less atrophy, many ways to tell.
btw all except Rebif worked wonders, for me. I shouldn't have included that one. Was the order of meds i've used. |
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"Thanks for this!" says: | ANNagain (04-29-2013) |
04-28-2013, 12:07 PM | #19 | |||
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Senior Member
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Good deal Eddie; hope it stabilizes you!
ANN, I'm not sure who has what backwards! When I say DMD (Disease Modifying Drug), I'm using what I understand the definition is: http://ms.about.com/od/glossary/g/modifying_drugs.htm. "Definition: Disease modifying treatments are a group of drugs that impact the course of multiple sclerosis (MS) by slowing the progression of the disease and decreasing the number of relapses. The disease-modifying drugs are: Avonex, Betaseron, Copaxone, Novantrone, Rebif and Tysabri." From my understanding DMDs (I'm assuming Tecfidera will be added to this list) are not for symptom management. I wouldn't surprised if I have this wrong!
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RRMS, diagnosed '00 Everything will be alright in the end. If it's not alright, it's not yet the end. |
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"Thanks for this!" says: | ANNagain (04-28-2013) |
04-28-2013, 12:58 PM | #20 | |||
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In Remembrance
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DMD may reduce the amt. and length of exacerbations and thus
slow the progression of disability. Since you are not having as many flares, you may notice that your MS symptoms seem to improve, but DMDs are not cures or symptom relievers .. per say. They are meant to reduce flares, to possibly reduce disability progression only. Any symptom relief is gravy...
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ Last edited by SallyC; 04-28-2013 at 01:29 PM. |
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"Thanks for this!" says: | ANNagain (04-29-2013) |
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